Understanding Rare Chromosome and Gene Disorders
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Sophie Sainty

Chair of Trustees

My son Max has a duplication 9p23.1p13 and deletion 9p23.1p23.3) and I also have a younger daughter. Unique changed our lives when we were told shortly after his birth of his diagnosis but also that they couldnt tell us any more about how he would develop. Uniques information and the family across the world which Unique put us in touch with a very similar chromosome disorder gave us hope by telling us all the things that he might do. As a former City lawyer, I have very much enjoyed throwing myself into holding coffee mornings and other fundraising events for Unique. Becoming first a Trustee of Unique and now Chair of Trustees has given me an invaluable opportunity to get involved in the planning of Unique’s strategy and to talk to the outside world about Uniques great work.